Connective Issues Winter 2026

HOW ONE FAMILY FOUND PEACE OF MIND Through a Free Foundation Resource

As a new year begins, many families think about com mitments they can make to care for the people they love. For families living with Marfan, Loeys-Dietz, VEDS, and related conditions, planning ahead can be one meaningful step toward reassurance and clarity. For the Justen family, that kind of planning became an essential step toward peace of mind. When Jameson was born in November 2020, his par ents’ world changed quickly and unexpectedly. What began as time in a specialty care nursery led to transfer to a children’s hospital and, soon after, a diagnosis of early-onset (neonatal) Marfan syndrome. “We had no prior knowledge that Jameson would be born with a connective tissue disorder,” said his mother, Amanda. “The pediatrician noted classic features like long fingers and toes, a dilated aortic root, and floppy lungs. His diagnosis was confirmed by genetic testing when he was a month old.” Receiving this news during the height of the COVID-19 pandemic made an already overwhelming experience feel isolating. “We knew no one else who was in our shoes, let alone anyone who even knew what Marfan syndrome was,” Amanda said. Jameson’s cardiologist encouraged the family to connect with the Marfan Foundation for reliable infor mation and support. That recommendation became a turning point. Through the Foundation’s Help & Resource Center, Amanda connected with nurses and sta ff who answered questions and guided her to trusted resources. “There is not a word that can

virtual programs, conferences, and online support groups, including one for parents of children with early-onset Marfan syndrome. As Jameson’s parents grew more confident in navigat ing care and advocacy, they also began thinking about planning for the future in a thoughtful, intentional way. “I wanted to make sure there were clear plans in place that reflected Jameson’s needs,” Amanda said. Through a Foundation communication, Amanda learned about FreeWill, a free, easy-to-use online service o ff ered to the community to help create legally valid wills. “FreeWill made the process seem manageable,” she said. “Everything was laid out clearly, and the reminders to finalize the documents made a big di ff erence. I felt a sense of calm once it was done.”

“It was about being prepared, not fearful.” ~Amanda

adequately describe the posi tive impact the Foundation has made in my life,” she said. “I no longer feel alone on this journey. The Foundation has empowered me to be the best and loudest advocate for Jameson.” Over time, the family found meaningful connec tions through local and

Create your free, legal will today and take an important step toward planning for your family’s future. Visit FreeWill.com/Marfan .

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